Abstract [en]

Objective: Health-related quality of life (HRQoL) for patients with ulcerative colitis (UC) or Crohn's disease (CD) is influenced by symptoms and treatments. Periods with increased disease activity are specifically trying, but the knowledge of how patients manage this is sparse. The aim of this cross-sectional study was to examine (1) HRQoL for patients with UC or CD, (2) how patients cope with increased disease activity, and (3) if coping is associated with HRQoL. Methods: A postal questionnaire was sent to patients with UC and CD who attended the gastroenterology and surgery department at a Swedish university hospital. Coping, HRQoL, and emotional well-being were assessed by Jalowiec Coping Scale, Short Form-36 Health survey, Short Health Scale, and the Hospital Anxiety and Depression Scale. Results: Patients with increased disease activity reported impaired HRQoL and emotional distress. This was more prevalent among patients with CD, as compared to patients with UC. Optimistic, self-reliant and confrontive coping strategies were most frequently used to manage stressors, with no differences found between patients in exacerbation or remission or between patients with UC or CD. Conclusion: Impaired HRQoL and emotional distress is prevalent among patients with exacerbation in UC and CD. Thus, a complete evaluation of psychosocial status and management of psychosocial distress should be included in the clinical treatment of the patient. Patients use a variety of coping strategies in an effort to manage increased disease activity. However, these results did not support any associations between coping and HRQoL.

Larsson, Kjerstin

Abstract [en]

The aim of this thesis was to investigate health-related quality of life (HRQoL) and coping strategies for individuals with ulcerative colitis (UC) or Crohn’s disease (CD), and to study the effect of a group-based patient information on anxiety/depression and HRQoL. HRQoL and anxiety/depression were investigated (n=492) (Study I). In Study II, anxiety/depression, HRQoL, satisfaction with information and evaluation of the patient information were studied (n=49). Coping with disease activity was investigated in 166 patients reporting current exacerbation (Study III). Fifteen patients were interviewed about disease-related stress, how this is managed and the need of support from the health care (Study IV). Patients with UC reported better HRQoL and less anxiety/depression than did patients with CD during both remission and exacerbation. Satisfaction with information had increased at follow-up 6 months after patient information. The information and the possibility to discuss with lecturers and group members were valued as most important. No change was found in anxiety/depression or HRQoL at follow-up. Both problem-focused and emotion-focused strategies were employed to cope with disease activity, with no difference between patients with UC or CD. The urgent need of toilet availability and stress associated to social situations were the major disease-related stressors. This stress was managed by finding out the location of toilets, bringing toilet paper and extra underwear and emptying bowel before an activity. The patients wanted information and possibilities to talk to experienced staff and to other patients about how to live with the disease. This thesis shows that HRQoL for some patients with UC, and primarily for patients with CD, is impaired. Thus medical staff should be observant of the psychosocial well-being of patients with CD and also of patients with relapse. Methods to identify and support patients with anxiety/depression and poor HRQoL need to be developed. Interventions should target the patient’s specific problems and at appropriate times.

Place, publisher, year, edition, pages

Uppsala: Universitetsbiblioteket, 2007. p. 71

Series

Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Social Sciences, ISSN 1652-9030 ; 31